what i want you to know about Aspergers syndrome

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest posts is by Kerry.


I want you to know that sometimes I wish my other child had Asperger’s too. I like it that my son loves rules and wants to do the right thing. Even as a newborn, he had the same personality he has now. It is not easy to be a toddler that does not like change or transitions. The world is new.

I expected my son to enjoy preschool, play dates and birthday parties. I had friends that were pregnant when I was and we had play dates together. I thought that our children would be best friends.

I learned the hard way that groups, surprises and new experiences mean meltdowns. Outings with friends were a disaster. He would cling to me, he would fall apart, and we would leave early. I watched other children playing together while my son would not get off my lap. I gave up on play dates. I did not have mom friends I could relate to. My son could tell you the fifty states and their capitals when he was 3 but he hated birthday parties. For a time it was lonely for me. I think every parent comes to that place where you have to let go of your expectation of what you child is going to be like. In my case, autism led me there.

We spent a lot of time at museums and parks. I learned what made my son feel comfortable. I sat up at night and googled autism. I did not know if he had “it” or not. I did not know anything. It took a long time for me to understand that rigidity was not something that he could help. I lost my temper about things were because of his Asperger’s. I feel guilty about that; again, I’m not sure if it was avoidable.

I’ve learned to be patient with my son. I experience joy when I can relate something to him that he understands and see progress. This year when he was six, we had a play date where he left my side and played with his friend.

My son floated on a cloud of happiness about his new friend.

I want you to know that my child can make friends. My child makes connections with gregarious kids, the ones that love to play and let it go that my son is awkward. I love these kids because he blossoms when he is with them. I get to see a side of my son that is otherwise not possible. If you have a friendly little boy or girl that disregards the fact that sometimes my son won’t answer or look you in the eye, but finds a way to play with him anyhow you would know that a child with Asperger’s has feelings. He has as many feelings as you do, it is just that his feelings are in a maze and they have to wind their way through his anxieties and his need for order to get out. Sometimes he is so concerned about order and rules that he can’t make space for being a child.

He loves animals and is concerned about social justice. He laughs at funny things and plays and talks naturally with his brother. When he sees a baby, he will say “oh sweet baby.” When I ask him what he wants to be when he grows up, he says a Daddy. He loves to cuddle and hold hands. He is good about explaining how he feels if you take the time to listen. I want you to know that since our one good playdate, my son is learning that other kids have friends and lives and things they are caught up with and now he is challenged to figure out how to insert himself in that stream. It's not easy for him to understand subtleties like "come over anytime" does not mean we can come back and every day. We talk about social niceties and taking turns and offering space and it's work for him. It's alien for him. I say, well, this is work for you but other kids are working like this at math and that's easy for you. Do you wish you had a different brain? He loves math and numbers and turning inward to count. I don't think he wants to change how he is either but like anyone he can feel frustrated and lost at times. It's just the things that frustrate him are so natural for most people -- like a field trip. The things that feel natural to him are things other children don't concern themselves with like pollination or lunar cycles.

When I can find a way to people his world with trusted friends, familiar places and champions, you would see that my son is like every other child. Yes it is more work to communicate with him, but I know I am a better person because of him. Because my son demands respect and courtesy, I’ve learned to be very deliberate in the way I speak to other children. Because my son does not like surprises, I’ve learned to enjoy the ordinary.

I don’t like it when people say that someone with Asperger’s doesn’t have feelings. I understand why you think that, but the reverse is true. He is not a robot. He feels things so intensely that he is overwhelmed. He can understand how you feel too, if you explain it in a concrete way. He's been raised with as much respect and care as your child. But we fight a different battle than you do. His homework is social exchange and his playtime is math worksheets.

I want you to know that as long as I resist the urge to say “that won’t work” my son is trusting with authority and makes progress with caring adults beyond what I thought was possible. Public school has been good for my son. I am proud that even though he is not coordinated, my son uses his ability to focus to make him a pleasure to coach. I watch him doing drills in the backyard and I think, look at you, loving sports. Maybe it is because he has been lucky with coaches that are very clear and fair when they speak. I learned that when he understands and feels confident, he moves mountains. I am learning not to stereotype.

Autism uses the symbol of the rainbow jigsaw in its awareness campaign. Before I knew my son was autistic, I knew he loved rainbows because they followed an order. I learned how important order and rules are to my son to help prevent surprises. I see the world in a new way because of my son. We talk about ocean currents, recycling and crop irrigation. We talk about God. I think he is going to change the world, because if anyone is going to decode the language of dolphins or see a glimpse into the mystery of the weather it is my son with his love of patterns.

Sometimes I think that Asperger’s should not be called a “disorder” because it is the insistence on order that makes my son who he is. I want you to know that Asperger’s is cool and sometimes, I think my son is on to something with the way he is oriented. If my son is in your class, I want you to enjoy his unique gifts and reach out to him. You will find a loyal friend with a pure heart.

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